"You'd be amazed at how much a person can take on," Bill Johnston told me when I asked how he's able to handle such a busy schedule. The response was a nod to his resilient and dedicated character.
Bill's wife Ramona was diagnosed with Huntington's Disease (HD) in 1999. Bill, and many others I spoke to about their experience with HD, confessed the same thing: "I didn't know anything about HD before I was affected by it."
HD is referred to as "the devil of all diseases." The neurodegenerative disorder is described as a package of Alzheimer's, Parkinson's, and Lou Gehrig's. A person living with HD gradually loses the ability to mentally and physically function. Like Ramona, most HD victims are sent to live in nursing homes because of the full-time care they eventually require.
Mindy, a volunteer for the San Diego Chapter of the Huntington's Disease Society of America (HDSA) told me, "I wouldn't wish the disease on anyone. Not even my worst enemy." Her father died of HD two years ago and her older brother is now living with it. HD is also hereditary.
While Mindy tested negative for HD, her younger brother refuses to see if he carries the gene. "If one of your parents has HD, you have a 50/50 shot at getting it," she said. "His son wants to get tested, but he won't, because if he tests positive, his dad will know he has it."
Bill shares a similar experience to Mindy. After Ramona was diagnosed, Bill said "it took [him] a while to come to terms with the whole thing." His daughter and son were 11 and 14-years-old, respectively, and he had to explain the disease to them. The whole family would witness Ramona slowly deteriorate before their eyes, and he had to tell his kids they could have HD too.
For a while his son had a very hard time dealing with their new reality, but he tested negative for HD when he turned 18 and "he's doing great now."
Bill's daughter Hayley has chosen not to get tested. "It's her decision," he said. "She knows she will have to be tested once things like having a family come up."
The Johnston family could keep their experience with HD private, but they don't. Bill said when he and Ramona found out she had HD, "We made a commitment to each other that we wouldn't hide."
Bill and Hayley raise awareness and funds by running. On Sunday, Bill ran the San Diego Half Marathon, along with Ramona who he pushed in a specially-crafted chair, in support of HDSA.
Bill and Hayley are on the board of directors for HDSA's San Diego Chapter as is former Charger lineman Mike Goff and his wife Jessica. Dean and Susie Spanos are on the Chapter's Advisory Board.
The San Diego Chapter of HDSA is the top fundraising chapter of all 54 chapters and affiliates. When I mentioned this to Mindy, she responded, "It's because of Bill." She added that "Charger players always come out to the events to support him."
The Chargers have been behind Bill's fight since Ramona's diagnosis.
"From the moment I stepped into Dean Spanos' office to tell him Ramona [had HD]," he told me, "they've been nothing but supportive." He mentioned a long list of past and current players who have aided in his mission, including Antonio Gates, LaDainian Tomlinson, Marcellus Wiley, Kris Dielman, Mike Goff, Philip Rivers and Nick Hardwick. Gates has served as Honorary Chair of the organization's annual Shoot to Cure HD event.
As the Chargers' Director of Public Relations for 24 years, Bill has outlasted countless personnel changes, well and poorly-played seasons, and his fair share of media whirlwinds. So just like his career, and Sunday's half-marathon, he will stick-out the fight against HD.
Before our conversation ended, Bill left me with this: "They've discovered the gene that causes HD, so now it's just a matter of figuring out how to solve it." He told me that as long as people continue to educate, fund and perform research, a cure can be found. The finish line is in view, they just need a means to get there.
The openness Bill demonstrates in regard to his personal plight is a testament to his brave and resilient character. Congratulations to Bill and Ramona on another step over the finish line on Sunday. Keep running. Keep fighting.
Visit www.hdsa.org to learn more about Huntington's Disease, and to see how you can help.